Several months ago, my family moved my grandma from her apartment in a retirement community to a shelter care facility where she has 24 hour help. The move was hard on her; she’s an extremely private person and although she has her own room, there are 10 other residents in the house.
She’s also not a person who trusts easily and as she has aged, her feelings about people outside of her own family have begun to border on paranoia. Fearful of losing her most precious possessions, she asked me to take care of her huge collection of family memorabilia – photos, newspaper clippings, funeral programs and guest books, letters, genealogies, and miscellaneous other items collected across her 88 years of life.
When I brought the boxes home, I gave them a cursory look, but didn’t have time to devote to a thorough investigation. Now that my kids are back in school, I’ve immersed myself in my family’s history. To say that I’m enjoying myself would be a serious understatement.
That side of my family were all farmers in the midwest. Their birthplaces are Illinois, Iowa, South Dakota, and Kansas. They were, universally, poor. They lived near small towns and were fiercely faithful people who walked to town every Sunday for services. None of the communities my family lived in were less than a full day’s travel from the nearest large city before the 1940s.
Those isolated women, my female ancestors, would understand so much of how I feel, I think. When the Spanish flu decimated my family in 1918, there was little they could do for their beloved children beyond trying to keep their fevers under control with wet towels. When their children were struck down by polio, mumps, “wasting disease,” or any other illness, they lived or died by the vagaries of nature, not medicine.
They just dealt with it. There were country doctors, of course, but before antibiotics, immunizations, and the thousands of other medical innovations of the early 20th century, there was little they could do for most illnesses.
I live in that world. There isn’t much medicine can do for pediatric mental illness, but worse, there isn’t much that medicine wants to do for pediatric mental illness. Carter is eight years old and his primary diagnosis is bipolar with psychotic features. Right now, he’s the most stable he’s been in over two years, and while I’m grateful down to my toes for that, I’m also furious that it took us this long.
It didn’t have to take this long. Certainly, mental illness is not like strep throat; we can’t throw a standard series of medications at it and assume that it will be fine. However, in spite of the fact that finding the right treatment takes time in even ideal circumstances, there’s no way it needed to take two years.
In the past two years, we have waited. We waited for our first appointment with a pediatric psychiatrist and we waited for a psychologist. After Carter’s intern psychologist graduated, we waited for a staff psychologist. We waited for a behavioral management specialist, and we’re still waiting for occupational therapy.
Worse than the waiting lists are the services that we desperately need but that don’t even exist. In the summer of 2009, Carter was acutely ill and in urgent need of a specialized environment during the day while I worked. He needed a day treatment program, but such a program does not exist here in Albuquerque. Carter was not safe for a regular child care environment and we had no options except for me to leave my job.
And so we sacrifice. We make do. We deal. We manage on our own, with severely limited resources and far, far too few options. We just get by.
When it became obvious to us several years ago that Carter was seriously ill, I could not imagine the vast injustices that exist in the educational and health care systems. I banged up against them constantly, refusing to believe that our (very expensive) insurance company and the US health care system would let such huge gaps in care go unchallenged.
I will continue to advocate for better (much much MUCH better) care for Carter and for all people living with mental illness, but in the meantime, there is some measure of comfort in thinking of the women who came before me, doing the best they could. They were resourceful and tough, creative and caring. They grieved their losses and kept living.
Those are the women I come from, bad asses all. Carter needs the same kind of mother; I hope I am growing into that legacy.
This post originally appeared at Hopeful Parents.